On Saturday April 22, 2023 i was in Alexandria VA with the National Psoriasis Foundation for their annual conference.
These conferences mean alot to me as I get to not only learn many things but catch up with others who have many of the same issues as me. Not only medically but dealing with insurance and laws etc.
One of the topics was on Step Therapy. This is where the insurance company wants you to try drugs X & Y before they will allow you to try Z. In working with Congress there are now laws in many states against this, however, they found a loophole and it continues on.
I also had an issue in 2021/22 , with step therapy. The laws have been passed in New York and I was part of that. So when my Dr said he wanted me to try a new medicine and saw Aetna prefers it, he prescribed it. Dr Aetna shot that down too, but knowledge is power. When I called Aetna, they said I needed to try two and fail two triptans first and I only tried one, I said that’s step therapy and is illegal in the state of new york, second the Dr said they no longer prescribe triptans to males over 50 as it causes cardiac issues. The woman stopped the conversation and asked for the Dr to call and gave me the 800 number. This was on a Friday, I was approved and had my meds on Monday.
I also had another issue that i believe falls in this same category this weekend and it really pisses me off.
Hey all if you havent heard I’ve been using a new hand therapy from ReactivRehab. Heres my OT being interviewed. If you are having issues with your hands and would like an OT try this. https://www.youtube.com/watch?v=YRh78doNwZE
If you have arthritis in your hands and think the exercises are dull, boring, BLAH! they are! then try this!
I touch the back of my head it hurts like i got hit with a bat. I touch my wrist, stomach, toes, and it feels like i was burned. I cant wear my medic alert tag as it feels like its 10lbs hanging on my neck. I cant sit at my desk to work as my butt hurts. She sent me the link above and yes i can totally relate. So i goto my rheumatologist and said i want to be tested for fibro. He didnt do this. I went to my neuro and said Allodynia, and he referred my to another neuro. In the meantime i went to my PCP and told her and we decided to try me on cymbalta. At first it didnt seem to help much. Then on. the full dose, some of the pain is disappearing. Ok awesome. Something else has happened though. I am suddenly feeling much happier, and getting things done that ive been putting off for awhile. I feel so good! I thought about it and yes. I have been depressed lately. Not really bad but enough that ive been putting things off not doing things i should etc. I am really feeling good now!
Not sure if the rest of my issues will clear up but ive only been on this for about a month now. I am so totally looking forward to the next couple months! Now i jus need to setup that appointment with the other neuro, and my rheum has retired so i need to find another.
Well it happened again yesterday… Ive seen the issue and i know what happens but i dont know it until its too late.
Let me explain. Yesterday i woke up and i was fine. Everything went well and before i realized it was 1pm. Ooops need to eat. I decided rather than cook id run down and grab some fast food. A small burger and fries. I do this once and awhile no issues. I come home eat and wow i need a nap. I wake up feeling like crap. I take a fioricet, and have a coffee. Nope, it gets worse, worse, nurtec time. The nurtec relieve some of the pain but the nausea is still there, and it gets real bad. I see the problem….
The problem is that i see it after the fact instead of before so i could prevent it. Ive seen it happen a number of times i think starting last year is when i identified it.
IT is HEAT. Yes. Its 72 outside and the house slowly warms to to about 10 degrees above what it is outside. Ive told myself on numerous occasions that i will watch the temperature and when it gets to 74 i will close the windows and turn on the a/c. Problem is i never remember to do this until its too late. The signs? First i start feeling sleepy or fatigued. Being chronically ill fatigue is part of life i must push through, so i dont pay attention to this. Next i feel ‘off’ just a little out of it, then im really tired and i nap. When i wake up an hour later its too late its over 80 in the house my head is pounding and i feel like im going to toss my cookies. I also never realize the signs until its too late.
Right now im looking for a small weather station to put in the house with some type of temperature alarm. If you have one that you use id appreciate a note with the brand etc.
Oh… One more thing. I dont like a/c. I feel much better with the windows open, as i love fresh air. I hate the winter because of this.
Yes… It’s a migraine, not a headache. About 2 weeks ago I saw an article that said something like it’s not a headache. It’s a migraine. It’s a major neurological event and that kind of stuck with me. I can’t find the article and I didn’t have a chance to read it but it’s so true..
I’ve been a migraine sufferer all my life. I can remember back to being about 4 or 5 years old and having massive headaches. My pediatrician back then said that I had sinus headaches. It wasn’t until my early twenties when I saw another doctor and described my headaches and he said it’s classic migraine at that point. However, the doctor did not want to prescribe anything because of my allergies. It wasn’t until I was in my forties that I actually went back and saw another doctor and actually started getting help. No one has really diagnosed what type of migraines I got? I described them as being chronic. And yes, they can last a couple of weeks. Sometimes they will be on and off for a few weeks. This one this week started Monday night. I got home from work. It was almost 5:00 p.m. I tossed some penne and meat sauce on and started to eat. My neighbor asked me if I’d give them a hand for a moment to check his tail lights. I went outside for less than 5 minutes. Came back in. I was freezing. I crawled under my electric blanket to try to warm up a little and I took a fioricet as I was just starting to get an aura. I think I fell asleep about 6:00 p.m. and woke just after 9:00. My head hurt worse and worse. I started getting nausea. I then took sumatriptan around 11:00 p.m. and then I took a little medical marijuana and put my head down on a hot water bottle at about 1:00 a.m. I was up at 5:00 a.m. like normal. Got ready to go to the office but the pain was too severe. I was also so nauseous that if I put anything in my mouth it definitely would have come right back out. I called out sick. I sat in a chair with the TV on very very low. Just so I would hear something. This is how I spent my entire day Tuesday. In addition I took more sumatriptan and more medical marijuana on Wednesday, I woke up and I went to the office. Although the migraine was fully concentrated on my stomach and I felt like I had a migraine hangover. On Thursday I once again went to the office. I felt a little bit better and Thursday night when I returned home I started getting the aura again. I then took another sumatriptan. I went to bed after a late dinner. Friday morning I woke once again. I have an aura. I have stomach pains and it feels like something is poking me in the back of the eyeball and the back of my brain stem. This is all normal to me. This happens all the time. This is clearly not a headache. What I forget to mention far too many times is in addition to the aura, and the nauseousness is I sometimes have a loss of speech. I forget words and stutter my speech. Also vertigo. I might be standing there talking to you and it’s like all of a sudden. Somebody just kicked my left foot out from under me. I’ll start tumbling over. Fun fun….
Next time someone says how is your headache? Thank twice before you answer…
I had a seriously bad year in 2020. Massive migraines muscle spasms asthma was killing me (or so i thought, more on this later) etc etc…
The year had started off on a depressing note, as the company i work for shut down one of its brands, then sold the beautiful building we built, we will now be renting a space within and its really sad. So we were rushing to move our stuff to our side of the building when america shutdown. I started working from home mid March and spent the first month or so in a constant migraine, mainly due to stress, and having to get through many issues with most of the staff never having to work from home in the past.
Then…. I started putting on weight. I had lost 30 pounds in 2018 and i gained back 35 sometime in the year, i started noticing that my asthma was getting worse. I cant breath when taking a very short walk (albeit uphill i was able to do this all of the previous year with no issues) I actually had days that i would take a 30 minute break and lie down with my CPAP on as my chest was killing me and it was soooo hard to breath.
When i saw my PCP october she told me i should have a colonoscopy as im 54 but theres a new test Cologuard. I took this and its simple poop in a bucket and mail it in. Nice! No prep no time in the hospital etc. love it. Saw my rheumatologist next. Knees are starting to bother me already so we ordered my Euflexxa. We talked and now hes added CPS and depression to my list. Ive had minor bouts of depression since i was much younger so its not something i talk about. CPS (Centralized Pain Syndrome) was new this year although i thought back a couple years and realized i must’ve had it alot longer, just its alot worse this year. We also talked about my weight gain, and i am off to see the gastro.
Cologuard test came back positive. For what? Who knows i have to do the colonoscopy to find out….. ok scheduled….. Talked to PCP again after reading up on the net, i bumped up my Co-Q10 and the swelling in my ankles went down. its been YEARS… Some of the sensitivity from the CPS has lessened and thats a plus.
Gastro sends me to his assistant who puts me on Saxenda on 11/30. I start to lose weight. Today, almost 2 months later im down 22 pounds.
Last night i saw a video that was posted in 2017 talking about the way the brain works and how some receptors stop talking to others and thats why we are in pain all the time. Makes total sense its blocking our natural opioids so of course thats why the Tramadol stopped working.
I noticed my windows are always wet during the winter and saw online that propane is a moist heat and when cooking you should always have a vent fan on, this was in VanLife and RV videos. I ordered a dehumidifier and saw that the house was at 87% humidity. In 2 days it was down to 50+ %. Guess who can breath now?
Things are starting to look better, ill posted my results from the colonoscopy when i receive them.
So my lungs have been hurting all year. On and off mostly but i do notice that on bad asthma days those are the worst. Ive actually had such a hard time i grabbed my CPAP and had to lay down, usually wind up napping when i do this. So i made an appointment and the doc wants me to do another Pulmonary Function Test, yay. If you dont know you sit in a plexiglass box and blow into a straw. Take a hit of your Albuterol and do it again. I did this a couple years ago and i was ok. Doc says if it not my asthma maybe its my heart. Ok you got a point, i gained back those 30 pounds i lost in 2018….
So just prior to this i made an appointment and saw my Rheumatologist and told him i think i may have Fibromyalgia and here are some of the accompanying symptoms that i had written down for him. He mentioned that this year has been stressful and i wholeheartedly agreed. When i mentioned that i gained those 30 ponds he asked if i was interested in seeing a bariatric doctor. Even through the mask he could tell i was giving him a look like he had 18 eyes and 98 legs. He quikly responded with, “The last thing they want is surgery, they will send you to a nutritionist etc first” So… I agreed. Friday was the bariatric appointment as well as the “Covid pre-op” prior to the aforementioned PFT.
Since i had 2 appointments only a few hours apart i took the day off. Walk into bariatric doc and nurse says, ‘so you are here to discuss surgery’ No. He leaves. Doc walks in. “So we offer 3 different procedures for weight loss”. Um no. Long story short i and going back to visit his nurse practitioner for possible medicinal help. You see i believe its all the medicine that im on since i was 180lbs in 2003 then when i got got sick in 2007 ive ben gaining weight ever since. I stopped 6 of my pills in 2018 and dropped 30 lbs. So lets reassess my meds or add something to the mix that can help.
I go back a couple hours later for my covid pre-op. On the phone to check in they say, “wait is this for the procedure NEXT friday?” eh yea.. “Oh well thats too early it must be done within 5 days of the procedure” and so the migraine begins.
On tuesday i will go for the covid test followed by a blood test for 2 seperate doctors. in 2 weeks ill see the nurse practitioner next friday the PFT plus i have 3 appointments to get my Euflexxa shots done.
Ok i’ll stop ranting for now i tool my Fioricet and it didn’t help so now onto a little THC and its helping to ease the pain. Maybe a little more but thats gonna wanna make me nap. See y’all later.
I made this decision in 2011, and i now have more conditions. Do i quit? NO! I push on and help more people with more issues as i learn them myself. I have to say Thank you for the awesome words Tiffany.
After reposting this on my facebook page i was thinking about it. My conditions….
I can remember migraines as far back as i can remember. I think i was 3 or 4, mom gave me tylenol. At some point a doctor said ‘sinus headaches’ I saw another doc in my 20’s who said classic migraines. I looked it up. Yes. He was afraid to give me meds as i have some bad allergies. Told me to goto the hospital, and as a result i ate extra strength tylenol for years. Sometimes every 2 hours for weeks. This can seriously damage your liver, i had no idea. I have since got them in check.
I really dont know how long ive had it for but i can remember having a couple attacks in the 80’s/90’s and i had no idea what was happening, or what it was. I started jogging in my early 40’s and got winded. Told the doc and well it was obvious when i started hearing the symptoms….
Two major disasters happened in my life in 2005. By 2006 i broke out, tried everything. Saw a derm and was diagnosed in 2007.
Starting in 2009/10 i would wake up in pain. I blamed the dog as he always fell on my and pushed up against me when he was sleeping. If you have never experienced this a 70 lb pittie is like a rock. One day in 2012 i looked at my fingers to see if it was time to cut my nails. My fingers are crooked. I went to a Rheumy he said ah! ya have a little Osteo, relax. I walked out the door and found another Rheumy. I was right, Psoriatic Arthritis. The 1st doc had run blood tests, no xrays, nothing, quack….
Routine visit to see my Rheumy, its 90+F outside. Cooler than 70 inside (im pretty sure) He starts the exam and sees my toes. Do your toes always turn colors like that? Um yes? Raynauds. Thx.’
I was on Stelara for about 1.5 years and my knuckles arent clearing on my right hand. Doc asks for an allergy test. I quit eating oatmeal every day and i clear up 100%
Seeing my neurologist. I had an MRI, now he asks for an MRA. Guess whose not right in the head? Yea its a small one, we just have to keep an eye on it. When they first saw it my blood pressure was high due to no longer eating oatmeal everyday. Now its 4 BP pills a day. Thx. Also cholesterol went through the roof so onto statins.
Massive Muscle Spasms
Yes. onto statins and now massive spasms.
3 Herniated discs
Quite common with Psoriatic Arthritis, these are also great for muscle spasms as well as numbness/tingling, i haven’t felt my thigh in years.
My ex girlfriend told me i had apnea. When we split i went for a test. Guess who has severe sleep apnea. Yes this train wreck right here…
Not diagnosed by a doctor yet but i see the symptoms. Its me 100% i need to move to a warm climate and join a blind nudist colony. Anybody sees this body they’re gonna faint or run.
Also not diagnosed yet but ill bet my last dollar, and it seems to be associated with…. Yes you guessed it Allodynia.
so even with this laundry list thus far (there maybe things i dont know or dont think about like high blood pressure high cholesterol etc) one thing holds true, and thats what was said for the 2020 HealthEVoices virtual conference, and that is Advocacy doesnt stop!